Let's help Ruth to a Brighter Future

Until age 23, I was what folk would call ‘normal’. I had just received my BTEC diploma in business studies. I enjoyed spending time with friends, travelling, dancing, music and all other typical things a young person enjoys.

Early September 2013, I met Tom, and after a few months we moved in together. I couldn’t have been happier considering I had also just received a managerial promotion at work!

On January 2nd, 2014, I felt very ill. It was this day that my life would change forever. Tom found me vomiting in the bathroom, sweating profusely from a fever and after putting me to bed & telling me to rest, he soon had to return! Tom heard gurgling noises and ran into the room to find me lying on the bed, gasping for air, eyes rolled back & fists clenched under my chin.

Emergency Services were called and the weeks to follow are just a blur to me. Doctors confirmed I’d had a severe brain stem stroke caused by a blood clot in my Basilar Artery and I was immediately rushed into surgery for a life-saving operation. Fortunately for me, the surgeon who carried out the operation was fairly conversant with this type of stroke! So…I did survive, but from that day on I also became a statistic….one of only 5% of people to survive this type of stroke.

From this point I was confined to a wheelchair, unable to communicate without the use of a computer (which took a while to get in place and to learn how to use). I couldn’t eat, chew or do any of the things that most folk take for granted. I was completely paralysed and locked in my own body! This condition is called "Locked-in Syndrome."

The odds were certainly against me. I was told I would never make a recovery and would never eat, chew, swallow food or even ever talk again.

I have however managed to prove Doctors wrong in some areas! I am determined to be ‘me’ again and I spend hours each & every day doing physiotherapy in order to build my strength. I can now eat, drink, chew and I can even whisper!

As time passed, I learned to squat with the help of a machine, and am able to push myself up again. Nine years of determination and unwavering support from my closest friends & family, not least Tom, has proven that my fighting spirit can & will defy the odds!

Yet my fighting spirit does not stop the immense loneliness that I constantly feel. The isolation that people living a ‘normal’ life could never be expected to understand! Trapped in a paralysed body with an active, intelligent (so I’m told) mind. The sheer frustration from people not listening to me! I cannot be heard! I use an eye gazer to communicate, which has even taken away my once witty sense of humour, because by the time I have managed to type a witty response to someone, the moment has passed….the conversation moved on!

I often feel exceptionally lethargic and have to sleep during the day, which then often leaves me awake and alone at night with just my thoughts for company. Recently I had to have another spell in hospital as a result of a 2nd ‘minor by comparison’ stroke. Doctors & Nurses were discussing my needs whilst in my room & if only they had taken the time to see what I was trying to tell them (as I knew what I wanted) but they didn’t hear because my voice cannot be heard. In my head I was screaming out everything they needed to know, yet they couldn’t hear me.

Very few people have any level of understanding of ‘Locked in Syndrome’. Consequently there is very little advice available of how to support us who are trapped in this minority club!

The best description I can give is that it feels like being ‘buried alive’. Due to 9 years of intense physiotherapy, I am now able to move my hands very slightly but I have absolutely no movement in my legs. It is however the lack of voice that I find the most frustrating. I can blink and often use ‘blinking’ as a form of communicating to answer ‘yes’ to a question. Yet then when I am blinking naturally, folk misinterpret this as a sign that I am trying to say something.

Something as simple as choosing my own clothes for the day is a luxury! Often, outfits are selected for me & in the grand scheme of things, resisting someone else’s choice seems frivolous.

As a result of my condition, this has led to other medical issues. I have recently been diagnosed with a hole in my heart! Something apparently I have had since birth and which no doubt has contributed to the strokes. I am now awaiting a procedure to mend my heart in order to try to prevent any further strokes. Unfortunately my condition does not allow me to queue jump (not that I’d want to as everyone’s life is equally precious) so I join the endless waiting list just hoping that my delicate body can hold its own a little longer & until it’s my turn.

Having covered some of the physical attributes (or lack of) from my condition, it’s the constant rollercoaster of emotions that I find the most difficult to handle. My emotions are maybe a million times magnified to those of an able bodied person, yet I can’t even control these! I cry at anything & everything! Especially the out-pouring of support that I receive & when anyone openly declares their intention to help me, I am reduced to a quivering wreck! This I find embarrassing but it is mainly the sheer frustration of not being able to actually say THANK-YOU to someone without referring to my trusted eye gazer friend hoping they’ll hear!

Ever since my stroke at age 23, my friends list has vastly reduced because people don’t know how to communicate if they see me in person. Very recently even my relationship with Tom (my rock for the last 9 years and still my friend) has broken down. We took the decision to part as we were not able to enjoy a healthy relationship that others take for granted.

My social life has for a while now, revolved around the beautiful people whom over the years have battled on my behalf, those who haven’t given up on me, those who want ME back!

Just before Christmas 2022, at a fundraising event run by a close circle of family & friends, I met a member of a local community support group ‘Community Unity Project’ (CUP) and the rest is history as they say! The local community have since rallied round to kick-start my fundraising. Team Ruth (their adopted name) are organising many events in order to secure the funding I need in order to afford life changing treatment.

What I find comforting about the relationship with Team Ruth is that a lot of the team discussions take place in an online messenger chat group. I find this temporarily gives me back my voice! Team members will drop ideas and comments into the chat and I can actually respond without anyone trying to 2nd guess my opinion! No-one speaks for me in here, I can speak for myself!

Then Ben came into my life! Lord knows how but the team recently managed to introduce me to Ben Parkinson MBE. I met Ben for the first time in March, along with his PT Danny Hayes. Danny is also providing his services completely free of charge to help the team fundraise in the local community by providing weekly PT sessions!

I am absolutely blown away at the thought that this could now actually be happening! I could actually manage to reach the £100k needed to allow me to access private treatment, therapies & even more equipment to both support my continuous physical improvement and to improve my overall quality of life! This in turn also supports my mental health!

Stem Cell Therapy is amongst the list of options available to me, however, since I suffered my recent 2nd stroke, it is no longer the most appropriate. Whilst I am not discounting Stem Cell Treatment as an option for the future, there are other treatments & therapies that I can access which are available in the UK! These alternatives are much less invasive and more cost effective!

I now look forward with confidence to the day when I can finally shout Thank-you from the Ruth-tops 

The damage caused to my body by the strokes means that I will never return to the person I once was, but it is possible that I will regain more movement, maybe even walk again? & if I can regain my speech, how amazing that alone would be!

Please feel free to follow my Facebook page: Raise the roof for Ruth

Here is my fundraising link: https://gofund.me/42a8fa2f